Hi everyone, I have my first appointment at a pain clinic in just over 3 weeks. I realize that pain management for this disease is very individual. Having said that, I'm curious to know what works for people who have had some success in managing their pain. I know many medications are available, some people take more than one. I've also been told that there are injections, nerve blocks, etc available for nerve pain. Please share with me what you have tried, what has worked, what has helped, and what was a flop! Thanks everyone!

I've bee going to a pain management Dr. for almost 4 months and I take 300mg of Neurontin two times and day and Norco every 4 to 6 hrs. I have Soma when needed. I'm still almost always in pain of discomfort but the meds ease it. I had to quit my job and the beginning of the month and applied for disability.

Jeff

syrinx x2 T7-T8 to T9, and T11-T12 to T12-L1...also bulging disc at T4-T5, T6-T7, and T8-T9.

I was dx'd with SM (T6-T9) about 5 years ago - had first symptoms (bone dislocations) about 15 years ago - I have muscle spasticity in the big muscles of my legs, plus a paralyzed bladder, neurogenic bowel, and degenerative discs/spondylosis in my cervical spine.

First: I love my TENS machineSecond: I love warmth on my sore aching muscles, especially in the morning or during a bad night

I'm also a big fan of Therapeutic Massage, but only if it helps you feel better. There are times, though, when a cup of tea, a teddy bear, your favorite perfume, and some really good chocolate are just what the doctor ordered!

I can keep most of the pain in check with what I'm on now. I take 60 mgs hydrocodone per day. 1800 mgs of gabapentin. (neurontin) and I just started 50 mgs of nortriptyline. It's getting to the point that the hydrocone is not as effective as it once was. Simply because of long term use. I have been holding off on stronger pain meds because using them can quickly turn into a slippery slope that I would like to avoid.

Thanks everyone for sharing your experiences. I have so many issues going on with my back that I'm not even sure what the pain is caused by. I'm guessing a combination of them all! I had 3 compression fractures 20 years ago in my thoracic spine. I had 7 vertabrae fused together. Now I'm told that I have a syrinx, kyphosis, scholiosis, vertabrael wedging, and bulging discs. In any event, I feel like I'm going to lose my mind some days. My family is so supportive but they must tire of listening to me complain, obsess, moodiness, etc. It's so wonderful to have this site where people can relate and offer a listening ear, advice and suggestions. Thank you, thank you, thank you!

Recently I have taken a whole new approach to managing my pain, mainly because my body (liver, GI, lungs) just wasn't up to dealing with the meds anymore. The pain made me sick and the meds made me sicker. Ugh. Oddly enough, I've found that once I got solidly detoxed and quit doing the things that were triggering pain, and gave my body enough rest...and ate the right foods...and had an intergrative pain MD get me on the right kind of supplements...the pain isn't any worse than it was. It might actually be a little bit better...like the opiates were causing a hyper-algesia or something? Making me even more sensitive to pain and making it harder for me to mentally/emotionally distance myself from it. The distancing was something I always used to be good at, and having lived with this since I was in my late teens...I'm glad to have that familiar coping tool back. Although now my friends argue with me about what my pain level really is, lol.

One of the great things about the meds was that they allowed me to have a bigger life and do more. Now my life is small and very restricted again. But the problem was that the meds just mask the pain. They don't really fix the problem. So I would overdo it, and actually make things worse for myself in the long run. I would do too much and let the stubborn pain get out of control and have to take more meds for that. It was a vicious cycle. Now I'm having to learn new alternative ways to manage the pain, and I'm happy to say it's working about as well or better than the meds were as long as I'm careful. Rozanne/phyre

"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman